Last night, not for the first time and probably not for the last, we made our five-year-old choose between drinking poison and having us force it down her throat. We did so calmly, patiently, quietly, never raising our voices or becoming angry. We’ve had too much practice at this to make the mistakes of the early days. Perhaps with more practice we can somehow find a way to make it a game, some way of making it all easier. For now, we simply let her know, with quiet patience and love, that this is not optional, and if she doesn’t take the poison herself, we will make sure it gets into her.

It isn’t always a long struggle. Some days she poisons herself without complaint, getting it over with in order to get on with life. But not very much, of late.

The poison in question is temozolomide, a chemotherapy agent that’s specifically used to treat brain tumors. I once read the label, with its biohazard trefoil, and stopped when I saw the word “cytotoxin”. That means “cell poison”; it attacks cells that are dividing, as cancer cells always are. But it attacks all dividing cells, not just malignant ones. A growing five-year-old has a lot of dividing cells, and we are poisoning them all. We just hope that we’re poisoning the cancerous brain cells more than other cells.

But her brain is trying to grow, too.

Temozolomide is an oral medication, usually in capsule form. However, for kids who haven’t learned the trick of swallowing four large capsules in quick succession, its toxins are suspended in a gooey liquid compound that tastes vile. I know; I tasted it, so that I could better understand her struggle. Worse still, it can’t be flavored. We’ve asked—begged—more than one pharmacist, but it cannot be combined with flavoring agents. So she takes her poison straight. At home. For days at a time.

When she asks why she has to take something that’s “too icky”, we remind her (even though we know she knows why, just as we know why she asks) that it’s to keep the “bad rocks” from coming back. That term is a holdover from when Rebecca was three and Kat had to have some masses removed from her abdomen, and “bad rocks” was the best way to explain to Rebecca what was being taken out of her mommy. We thought she was too little to have to worry about cancerous growths, so we simplified things to make sense to her. We still think she’s too little to have to worry about cancerous growths, but we can’t be euphemistic any more.

And if we ask her what will happen if the bad rocks come back, she says, “Not telling” in a small, scared voice. This is actually a common reply from her, but usually it’s said with a smirk and a gleam in her eye, the one that kids get when they think they’re getting away with something and it seems like the biggest joke in the world. When she refuses to tell us what will happen if the bad rocks come back, it’s because she understands all too well. She understands better than we can bear.

We know she understands because when we were home between her surgeries and the radiation treatments, twelve days of having the family together in the midst of everything, Rebecca got very mad at her sister for not letting her play with a toy. “It’s for kids eight and up,” Carolyn said, reasonably. Rebecca, of course, found this line of reasoning lacking, and came storming into the kitchen. “Carolyn won’t let me play with that toy and I have to play with that toy!” she shouted. We explained that it was in fact for older children, and that she certainly might want to play with it, but that wasn’t the same as having to play with it. “I have to!” she shouted again, her voice rising almost to a scream, breaking with angry, anguished sobs, “I have to play with it now because it’s for kids who are eight years old AND I’M NEVER GONNA BE EIGHT!!!”

I can think back to the first days of her illness, lying almost unconscious with so many tubes leading into and away from her, with relative dispassion, as if analyzing a movie. It might even seem like I’m doing that right now. But that moment of anger and fear erupting from our five-year-old daughter brings me to tears every time I remember it. I’m typing this part with tears streaming down my face; it’s taken me this long to be able to come to a place where I can write about it at all. Even now, I want to throw up. I want to die, if that could somehow save her.

Instead, I have to, we have to, make her poison cells all throughout her body and especially all throughout her brain in the hopes of killing off the cells that might kill her. All the other cells that die in the process, the good cells that are trying to grow more curly hair and develop her brain and lengthen her bones and help her grow up, are collateral damage. We tell ourselves that those innocent, beneficial cells are acceptable losses, and hope that it’s true. We hope that the damage we do trying to save her doesn’t end up killing her later.

In the end, she took the medicine herself, as she always does, choosing to be in control of how things happen to her. It took several false starts; for each, she calmed herself by sitting up straight, closing her eyes, and taking a deep breath. And then, as soon as the syringe touched her lips, she crumbled back into sobs, her body shaking with visceral rejection and misery. Not anger, even though it would be easier for us if she hated us for what we keep doing to her. If she blamed us for making her do this. It would be easier to be targets of her anger than witnesses to her hopeless, knowing, abject misery.

Finally, after all those tries and stalling tactics, she made her choice. She squared her shoulders, slowly put the syringe to her lips, and pushed the plunger, drinking it all down in two audible swallows. She then immediately drank half a cup of Gatorade in an effort to mask the taste. She doesn’t usually like Gatorade, but it’s what she asks for to go with her chemotherapy. So we give it to her.

But only after she’s poisoned herself.

People ask us how we’re holding up, and when we say we’re doing pretty good, we’re being honest. We know that we’re lucky to have to poison her, just like we were lucky to have to irradiate her. We’re beyond grateful for those opportunities. We are. But we’re also painfully aware of the nature of what we’re doing. We feel every last drop of the horror it is to be grateful to be damaging our baby; to have the good fortune to force her to choose, day after day, whether she will poison herself or we will do it for her.

Eric,
thank you for carrying on with your writing, I hope it helps a little knowing that there are many of us thinking of you all, wishing you well—and indeed, wondering how you’re holding up, how you are coping with this struggle. No one can fathom your situation.

Rebecca sounds like an amazing, strong and spirited girl – may the future bring healing and recovery.
Sending you, Rebecca and all your family the warmest wishes, and lots of love x

Eric, if it were possible for friends to take this burden from you, even for just a minute, I would. As you we’ll know, I’m not alone in feeling so. You and Kat and Rebecca, too—especially Rebecca—are showing incredible strength.

I imagine that at times it seems that your reserves are exhausted. When you feel that way, do the best you can to trust that the strength you need will come to you.

Just as the resolve to drink the poison and trust that it could help her came to Rebecca, even in your most desperate moments the strength you need to do the best for her will come to you.

I’m not usually one to pray, but lately I have been saying a small prayer each day for Rebecca, and Kat, and you.

I’ve been following and learning from you for years. I know that you’ve invested your time and efforts towards helping others even if it’s just in a professional manner. Nothing you do for others will ever go unpaid. I’m praying for you and your family and I hope you know that you are due for something good. I pray you all grow stronger from this and that she will be able to fulfill all the dreams you have as her parents and she has for herself. Please let us know how this continues and thank you for sharing. You are never alone in this.

Being a father to a 6 year old daughter, I can understand your pain when you see your daughter sob while taking her medication. I might have shed a tear or two visualising your young princess taking those injections and capsules.

Sitting thousands of miles away from Rebecca, I can do much except probably put in a word or two to God for her speedy recovery.

God bless her. She will grow strong, healthy and old is all I can wish for, Eric.

Writing about it isn’t easy. Going through it is even worse. But keep writing…

It helps those of us who can’t be there every day for you understand your journey and in some small way feel closer to you. And even though it may be the furthest thing from your mind, these posts have helped me appreciate my children in a much deeper way, embracing them just a bit tighter, reminding myself that the fleeting annoyance are fleeting and their lives are precious.

Eric, this is beautifully written and heartbreaking. Thank you for sharing a hard piece of your family’s journey. I can’t imagine what you must be going through and my thoughts are with you and your family.

I reply here because it sounds like the capsules might be preferable to the liquid. We needed our almost-4 year old daughter to take some large pills (I think around 16-18mm?). It took some practice, but on the off chance you haven’t heard of this technique she learned it by first swallowing a single tictac with water (putting the pill in the mouth first, then adding water and swallowing). Practicing with various head tilt angles with varying amounts of water. Then 2 at a time. Then 3, 4, 5, and then 6. More head tilts and water amounts. She was then easily able to swallow some not-important medium sized pills no problem. Then the big ones. Took a couple boxes of tictacs IIRC.

Eric, I can’t even imagine what you are going through but thank you for sharing it. Seems like Rebecca is a little fighter, just like the rest of you, and she will overcome this. You all will. Thinking of you with hopes that 2014 will bring you nothing but great news.

Wow. Feeling like you took the words right out of my mouth (and then said them better). Currently in the hospital room with my 2.5 year old who is on day 4 of 6 inpatient with ifosfomide +etopside pouring into his port from his friend “ivy” (whom I refrain from calling “poison ivy”) . Week 11 of 54 for relapsed rhabdomyosarcoma. Preparing for a trip in 2 weeks to New Jersey (from Israel) for proton radiation, which will hopefully result in less permanent damage to his neck vertebrae, teeth, thyroid…
Thx for sharing your story. I’m with you every step of the way. Sounds like you are doing everything and looking at everything so much like I do (or try to). Your daughter is lucky to have you!

Good heavens, friend. I should have been following your news better. I can’t tell you how sorry I am that your family is going through this and how much I admire all of you for facing this and dealing with it. My prayers will be with you all. But, damn.

I am so sorry for your family. I am being treated for cancer but as I realized with the diagnosis, while filled with terror, and initially executing to die soon, I am a grandmother, I am 62 (then…I had a birthday the next week). I have reared my children and seen all of them get married, and two of them have their own kids now. My death would not be so terrible as the death of a younger person. I hope you daughter grows up to remember the terrible tasting medicine as a blessing. I hope your family has much joy ahead of you.

Let (suggest) she stuff toilet paper in her nose (or hold it) for a minute before she swallows, swallow fast, follow immediately (if not sooner) with desired pleasant stuff, eat bread… or just chew and spit it out… wait a minute; then, take out the paper.

Something in all that, possibly the loss of olefactory receptors, or the distraction from the procedure, makes it better than it would have been.

(Truly, children can swallow pills long before they (or their parents) realize that they can. For some, that’s the only saving grace – better than an NG tube.)

I cannot tell you how very sorry i am that your family is going through this nightmare .I know how you feel how helpless things can seem because i am going through the same my youngest daughter at the age of 40 was diagnosed with stage four pons glia blastoma.August 19 2012 will always be burned in my brain.She is holding her own and has lived two months longer than the doctors has said she would never give up hope will keep you and your family in my thoughts and prayers

Eric, please investigate ketogenic diets and gliomas, the research is still in its early days however the studies done so far are extremely promising. These diets were once the mainstay treatment for epilepsy for children in the early 20th Century but went out of fashion when the pharmaceutical age hit. It is now making a revival where drugs fail, and it’s being discovered that it has many other beneficial properties, including neurological disorders, and especially brain tumours (and perhaps other types of cancer).

The good thing about the diet is that it can be followed concurrently with other treatments, as it aims to strengthen healthy cells and weaken cancer cells. The crux of it is severe carbohydrate restriction and just adequate protein intake to maintain muscle tissue. The rest of the calories come from fats (healthy fats – no refined vegetable oils). This places the body in a state of ketosis where the primary source of fuel for cells, including brain cells, is ketones, not glucose. Cancer cells, the theory goes, are highly dependent on glucose and have not developed the metabolic flexibility to use ketones like other cells. You are basically starving and weakening them.

As it is a proven treatment for epilepsy, there are many resources and recipes on the internet for this type of diet, especially for children. There are very few side effects. It is sometimes referred to as the “cream cheese” diet, as cream cheese provides the required macro-nutrients in the correct ratios for the diet. Long water only fasts are an alternate method, but this is pretty tough, especially on children.

Just so you know, I am also taking temazolomide at the moment for a GBM I had removed a few months ago, I can’t say I’ve found it too bad compared to other chemo treatments I’ve seen friends go through, although I can’t imagine what it must be like for a child. Like you mention, it’s basically poisoning your body, although of course the benefit is judged to outweigh the harm. It doesn’t make it any easier though.

I am following this type of diet myself during my chemo and radio, and have seen a lot of side benefits. As for its effect on the GBM, time will tell. Of course I am by no means a doctor nor nutritionist, nor can I guarantee my own fate let alone anyone else. Having said that, should you research it and feel there may be benefit in it, please feel free to contact me and I will be happy to share whatever information I have, if even a little.

I’ve been reading your blog for about fourteen years. Like I tweeted at Zeldman back in October when he wrote about his mother, I came for the tech but I stayed because you had a voice. Reading this as a parent is devastating and hopeful at the same time. Thank you for continuing to share with us.

I just came your site for the first time to read about CSS and was deeply touched by Rebecca’s story. I pray that God gives her the strength to make it through this difficult times. Nothing is impossible to God. Stay strong!

Eric, much like the others I came here for your CSS abilities. But I have to admit, I cried as well. I have an 11 year-old and I could NEVER imagine life without his presence. I truly wish Rebecca good health and a long beautiful life. Strength to your family!

So. At any given time, like anyone who’s experienced CHF, COPD, or diabetes at length, there’s a non-zero chance that I’ll be asked to pop pee pills, since that’s the most convenient way to relieve edema and the (relative) sodium overload that causes it. It’s that, or maybe you drown a fair distance from the nearest large body of water. Fun times, that.

What laymen and non-patients don’t realize is that you also need to keep your potassium in balance, so you get clobbered with KCl doses, dispensed as either awful horse pills, or a rather vile solute. I’ve declared with a straight face that I’ll accept an intramuscular injection more readily than a dose of potassium.

…But after reading this, I’ve seen confirmed my original suspicion that my right to complain is a mote next to others’ stories.